Family battling Children’s Hospital to bring teen home for Christmas

[CathyinTexas]

http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

I am grateful for the news sources who are brave enough to tell this story.

 

[jjenny]

I believe the actual accusation was medical child abuse, which differs from neglect. From inferences in various articles, it seems that rather than a lack of treatment, it is believed they were subjecting her to unnecessary and overly invasive treatment.

Again though, that is just reading between the lines, as we do not have the full story.

Considering parents didn't do these procedures themselves, how is it believed they were subjecting her to unnecessary treatments? Procedures were done by doctors in a reputable hospitals. These doctors must have decided the procedures were needed.

 

[Gardenlady]

Considering parents didn't do these procedures themselves, how is it believed they were subjecting her to unnecessary treatments? Procedures were done by doctors in a reputable hospitals. These doctors must have decided the procedures were needed.

No, they don't do the procedures themselves. But the various articles indicate that Justine had many procedures done by numerous different specialists, as well as having been to numerous different PCPs. It gives the overall picture of her care not being coordinated by one PCP, and further despite the numerous surgical procedures she had shown no improvement.

Doctor shopping, plus lack of a unifying treatment plan may have led to a number of unnecessary procedures that was resulting in harm to Justine. It can also be easier than you think to get a certain doctor to perform what might be an unnecessary procedure, or prescribe what might be unnecessary medications - all you really need is a parent desperate to do anything to help their child, and a provider who is moved by the situation.

But again, this is speculation, just like everyone else's opinions here. we just don't know, since we only have half the story.

 

[liljim]

I am glad they will be having her care overseen at Worcester. UMass is yet another well-regarded facility (really network of facilities), and hopefully as a third party to this can help diffuse suspicion/mistrust from either "side".

yes this can only be a good thing. well, hopefully.

 

[liljim]

Considering parents didn't do these procedures themselves, how is it believed they were subjecting her to unnecessary treatments? Procedures were done by doctors in a reputable hospitals. These doctors must have decided the procedures were needed.

cant say for sure because we dont have enough info, but it would seem to me that children's disagreed with the aggressive and invasive treatment she was given with a diagnosis that was not certain.

i would think they then saw things that made them believe something else might be happening here, we have seen some of this evidence, i would suggest there is quite a bit more we have not seen (whether you then choose to agree or disagree with it or how much weight to give it).

that is probably the thing i would most like to hear more about, that first week at children's and the process they went thru and the information they used to make the initial decision to pursue another course, and to then insist on it.

one thing that i think the media is oversimplifying and is really misleading people on (IN MY OPINION) is the idea that the parents simply asked for a second opinion and then children's sought to remove custody because of that.

 

[liljim]

I am glad they will be having her care overseen at Worcester. UMass is yet another well-regarded facility (really network of facilities), and hopefully as a third party to this can help diffuse suspicion/mistrust from either "side".

i have a lot of experience with them too but i will be damned if im going to post anything about it here. lol

 

[cinsbythesea]

I saw the father on Megyn Kelly's show a few nights ago which raised more questions than answers for me. Not to my surprise, my reliable go to website for information on just about any case, Websleuths, has a very informative thread answering some of my questions - but still - so many questions with very little answers as to what is really going on in this very frightening case. Justina, whom this is supposed to be all about, seems to be lost in the midst of finger pointing, gag orders, threats, etc etc., and definitely does not seem to have gotten any better, and instead, worse, during the last year. It's frightening to me that the State can step in and actually take away your parental rights the way that we have seen here. On the Megyn Kelly show, the father said that they were allowed only infrequent supervised visits with their daughter. I would assume that was a mechanism for BCH to monitor the conversations? Or is that standard operating procedure in a locked ward? So many questions!

This case is almost surreal as it's so frightening.

 

[Gardenlady]

I saw the father on Megyn Kelly's show a few nights ago which raised more questions than answers for me. Not to my surprise, my reliable go to website for information on just about any case, Websleuths, has a very informative thread answering some of my questions - but still - so many questions with very little answers as to what is really going on in this very frightening case. Justina, whom this is supposed to be all about, seems to be lost in the midst of finger pointing, gag orders, threats, etc etc., and definitely does not seem to have gotten any better, and instead, worse, during the last year. It's frightening to me that the State can step in and actually take away your parental rights the way that we have seen here. On the Megyn Kelly show, the father said that they were allowed only infrequent supervised visits with their daughter. I would assume that was a mechanism for BCH to monitor the conversations? Or is that standard operating procedure in a locked ward? So many questions!

This case is almost surreal as it's so frightening.

It's probably the procedure if it is suspected that the parents are influencing her psychological state, either purposely or inadvertently. If, for example, Justina has somatoform disorder, then stress can exacerbate that condition. Certain topics, including medical tests, procedures, diagnoses, etc, can be stressful, and the conversation should be kept away from those topics. It was noted, for example, that the patient displayed signs of anxiety when her parent/s were in the room, leading to one of the goals of her care at Children's to be no discussion with her about certain things, as it could exacerbate her illness. If the parents will not abide by that, then that's probably why visits are supervised.

As for her condition worsening, we do not know that at all, we have only half the story. What we do know is that her condition has at least stabilized to the point where she is being moved to a different facility to meet her ongoing needs.

 

[Gardenlady]

yes this can only be a good thing. well, hopefully.

Yes, well, soon we may hear that yet another well-regarded Mass hospital is colluding in some conspiracy to yank children away from their parents for... God only knows what reason?

 

[Gardenlady]

i have a lot of experience with them too but i will be damned if im going to post anything about it here. lol

They did wonderful work with a friend of mine who had a traumatic brain injury after a terrible accident.

I'm sure though that he just got lucky.

 

[liljim]

"Or is that standard operating procedure in a locked ward? So many questions!"

no its not standard procedure, parents in a typical case can visit for 3 hours or more per day and longer on the weekends, passes are given often too if appropriate.

it is certainly a big deal for them to limit visitation, especially to the degree they are reported to have done here. they have to have a very good reason for doing so (im not saying they did or did not, im saying they must believe that they did and have documented it).

one thing that will certainly lead to supervised visitation or limited visitation is if you talk about subjects that you have been told not to bring up. in this case (THIS IS MY OPINION) i would think that this was done because the family is so adamant that what children's is doing is wrong, that justina is getting worse and is in great danger, and that they fully intend to get her out of there and return her to her prior treatment as soon as they can - i suspect they may have been discussing things just like that in front of her/with her.

if that is the case i have great sympathy for them in that regard, as i dont doubt they truly believe what they are saying.

 

[Peliman]

Going to post a couple interviews here from the News interviews where the father broke the gag order and discussed the case two days ago.

Yesterday a custody hearing was held and she may go to foster care.

Mother of Justina Pelletier Collapses After Judge Says She’ll Stay in MA State Custody

The mother of 15-year-old Justina Pelletier collapsed and was taken to a local hospital today after a custody hearing.

Justina's parents today learned that she would be transferred from Wayside Youth and Family Support Network in Framingham, Mass., to foster care. Justina will remain in Massachusetts state custody.

http://foxnewsinsider.com/2014/02/2...es-after-judge-says-she’ll-stay-state-custody

Father Breaks Judge's Gag Order as Daughter Remains in State Custody

A Connecticut father is speaking out despite a gag order because he says his daughter, who is in state custody, is “at her breaking point.”

Interview here

 

[cinsbythesea]

I'm sorry if this has already been asked and answered but if so I missed it. Has the original mitochondrial doctor weighed in on this? Did he find the parents to be "medically" abusing their daughter? It seems he would be the one to break the stalemate - that the parents were following all his recommended medical advice - or they weren't and were submitting their daughter to unnecessary procedures, etc. Also - she's fifteen - and able to speak for herself. Has SHE been interviewed during this year of upheaval in her life?

 

[Blue_Dolphin308]

The original Dr. disagrees with Boston. He firmly believes that the 15 year old child suffers from Mito. However he has not been allowed to take part in her care. It is unknown if the child has been interviewed. I think that there are valid concerns when Boston has several complaints against them in regards to involving CPS. If it was just one claim it would be different. The fact that multiple families are coming forward to report almost the same story tells me there is something going on at Boston that needs to be addressed.

 

[Reader]

Link? I dont' see anything of the sort in the latest globe article. Tufts is the hospital that diagnosed her with mitochnodrial disease. So what would they report the family for? Tufts clearly believes this disease exists and Justina has it, since they diagnosed her with it.

I'm sorry if this has already been asked and answered but if so I missed it. Has the original mitochondrial doctor weighed in on this? Did he find the parents to be "medically" abusing their daughter? It seems he would be the one to break the stalemate - that the parents were following all his recommended medical advice - or they weren't and were submitting their daughter to unnecessary procedures, etc. Also - she's fifteen - and able to speak for herself. Has SHE been interviewed during this year of upheaval in her life?

BBM in both quotes above. Sorry but my time is limited lately, but I have read all the globe articles and did not see where Tufts had also reported the family for abuse. Can somebody please provide the link to that article and maybe a short quote about it? TIA, will check back later.

Also, thanks for the news and great discussion on the case. I am hoping the best decisions have and will be made for Justina. So sad to think just a year ago she was skating and enjoying herself.

 

[Gardenlady]

Reader, here is the pertinent quote from the multi part Globe article linked above:

The Pelletiers had butted heads with other doctors in Connecticut — Justina’s pediatrician there would accuse them of doctor-shopping and “firing” multiple providers. And despite their fondness for Justina’s main doctors at Tufts, they had previously clashed with other members of the Tufts staff, who had filed an allegation of neglect with the Connecticut child-protection agency in late 2011.

The complaint alleged that the parents had not followed through on recommended mental health services as part of Justina’s overall care. It also cited Linda’s professed reluctance to assume responsibility for inserting a feeding tube into Justina at home. But the allegations were dismissed.

Ill grab a link to the story (can't do multiple cut and pastes on the darn iPad)

Edit - here is the link: http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html

 

[i.b.nora]

BBM in both quotes above. Sorry but my time is limited lately, but I have read all the globe articles and did not see where Tufts had also reported the family for abuse. Can somebody please provide the link to that article and maybe a short quote about it? TIA, will check back later.

Also, thanks for the news and great discussion on the case. I am hoping the best decisions have and will be made for Justina. So sad to think just a year ago she was skating and enjoying herself.

See page one of this very thread. A few posts refer to items in the articles and there are a few quotes that are available without even accessing the articles.

 

[prima.facie]

It's possible that Justina has been given medication by BCH Bader 5 staff as part of her "treatment", and that hair loss is a side effect of those drugs. There is a study, Hair loss in psychopharmacology, (http://www.ncbi.nlm.nih.gov/pubmed/10798824), which says that such medication-induced alopecia is a possible side effect of many psychopharmaceuticals. Another study, Thinning Hair or Hair Loss as a Bipolar Medication Side Effect (http://bipolar.about.com/od/sideeffectslibrary/a/hairloss.htm), explains that medications containing Lithium can cause thyroid problems associated with losing hair.

Regarding receding gums, some medications cause dry mouth which leads to problems with gums. In the article, Pscychotropic-induced dry mouth: Don't overlook this potentially serious side effect (http://www.currentpsychiatry.com/index.php?id=22661&tx_ttnews[tt_news]=176472), the authors mention that dry mouth is a reported side effect of more than 1,800 drugs from more than 80 classes.

There is also the possibility that poor appetite -- another side effect of psychopharmaceuticals--could lead to problem from a lack of proper nutrients. Or poor appetite could simply be a result of suffering days long headaches or nausea that are also side effects of those medications.

Some people may be likely to suffer from a deficiency of Vitamin D. Among them are those who suffer from gastrointestinal diseases and those who receive little or no exposure to direct sunlight. Vitamin D is essential to promote healthy bones, no matter how old a person may be. In his petition to the court, Justina's attorney mentioned that she had not received direct sunlight since entering Bader 5.

This is backed up by other sources, for example on WebMD, Dr. Amy McMichael, a professor of dermatology, lists stressors that can change the physiological balance within a person's body which could lead to hair loss. These include a strict low-calorie diet or significant weight loss, certain medications, and nutritional deficiencies like Vitamin D, lack of sleep. In addition, Paradi Mirmirani, MD, another dermatologist, points out that the cause of hair loss happened "three, six, or even nine months before the hair loss began." (http://www.webmd.com/beauty/hair-health-11/hair-stress-effect?page=2) This source also mentions that "hair loss can be an early sign of about 30 different diseases."

Given the situation in which BCH has placed Justina, IMO, the only surprise is that these symptoms have not been remarked upon previously.

Really? We are all just lucky? Wth as many children as Children's Hospital in Boston treats, don't you think if it were some shady outfit that yanks kids from their parents with regularity that there'd have been an investigation, or outcry prior to this? This is a greatly admired hospital for a reason, not some chop shop outfit on the corner.

I find it highly doubtful the hospital is involved in some grand conspiracy. I doubt it even more now, seeing the right wing groups now involving themselves in this sad situation.

um. to be fair it is NOT just "right wing groups" involving themselves. i find that just as ridiculous as you find people accusing the hospital of some conspiracy.

i found out this case from a liberal source. and im not sure why a "right wing group" would be any less valid than a liberal one. is there any evidence that the right wing group is reporting false information? and vice versa with the liberal sources.


with that said. it is absolutely fair for people to take up sides based on their own interpretation of what facts are out there when the facts that are out there are limited. its not a "right" thing or "left" thing. it most certainly is not a political party issue.

also, everyone has different experiences with businesses and people. for every person who has had a positive experience, you will find someone who has had a negative experience. for this, i never ever rely on reviews. i just find out things on my own. i have no dog in this show, yet i can see legitimate views from both sides and politics has NOTHING to do with any of it. i am not even sure what i think of it all, as its all to strange and not enough info. but my political leanings have ZERO to do with my thoughts on this case :/

here is a nice super ultra liberal site who has taken up their own cause which seems to mirror the conservative site that you blasted. this is where i first heard about this case and im no liberal.
http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

how about we leave politics out of this tragic situation...it has no bearing on any of this.

 

[Reader]

Thanks, Gardenlady and i.b.nora!

 

[Gardenlady]

um. to be fair it is NOT just "right wing groups" involving themselves. i find that just as ridiculous as you find people accusing the hospital of some conspiracy.

i found out this case from a liberal source. and im not sure why a "right wing group" would be any less valid than a liberal one. is there any evidence that the right wing group is reporting false information? and vice versa with the liberal sources.


with that said. it is absolutely fair for people to take up sides based on their own interpretation of what facts are out there when the facts that are out there are limited. its not a "right" thing or "left" thing. it most certainly is not a political party issue.

also, everyone has different experiences with businesses and people. for every person who has had a positive experience, you will find someone who has had a negative experience. for this, i never ever rely on reviews. i just find out things on my own. i have no dog in this show, yet i can see legitimate views from both sides and politics has NOTHING to do with any of it. i am not even sure what i think of it all, as its all to strange and not enough info. but my political leanings have ZERO to do with my thoughts on this case :/

here is a nice super ultra liberal site who has taken up their own cause which seems to mirror the conservative site that you blasted. this is where i first heard about this case and im no liberal.
http://www.huffingtonpost.com/cristy-balcells/first-do-no-harm-how-we-f_b_4843997.html

how about we leave politics out of this tragic situation...it has no bearing on any of this.

Thanks, I don't really have need of the Huffpo article though, as 1- I don't find them to be particularly reliable and unbiased and quality there differs from columnist to columnist, and 2- the MSM both print and tv here in Mass are covering things quite well.

Look, I'm not the one who has politicized this. We already have, as previously cited on thread, two quite conservative groups taking up this cause now who do not need to involve themselves - one a religious group, an the other a legal/religious group. This issue is already politicized, no matter what I post here lol. It's being used as fodder for conspiracy theories, an as "evidence" of... something... for those who would like to see social services curtailed.

All of which, again, is taking place knowing only half of the story.

Which is a shame. Someone's health is at stake, and, much like in the terry schiavo case (which I note one of those previously mentioned groups also involved itself in), this girl's private health matters will now be used as fodder in some politico-social "battle". It's a shame especially seeing conclusions being jumped to without knowing the full story. Folks are describing this as scary and frightening etc all because the issue is now being emotionally inflamed by politically motivated press and groups. Any issue can be made "scary" I you're only working with half the facts. :twocents:


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